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Wish us luck !!

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Offline Zaini

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Re: Wish us luck !!
« Reply #300 on: June 19, 2009, 05:16:40 PM »
Good idea Manal ! i'll PM her.:)

Zaini.
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Offline Zaini

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Re: Wish us luck !!
« Reply #301 on: August 08, 2009, 06:58:54 AM »
We are at the hospital for tx,Z's SGPT came back 231 :( doctor is not decided if he will reduce the dose of asunra but he asked me to see him again b4 leaving for home,her ferritin is 1400 something,any ideas ???
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Offline Andy Battaglia

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Re: Wish us luck !!
« Reply #302 on: August 08, 2009, 02:30:38 PM »
Zaini,

Since her ferritin has continued to drop, it won't be a critical matter if little Z has to lower her Asunra dose temporarily. The SGPT is not at any dangerous level, but it may cause some concern about Asunra, so if the doctor wants to exercise some caution at his point and lower the dose, go along and see what the next test reveals.
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Andy

All we are saying is give thals a chance.
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Offline Zaini

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Re: Wish us luck !!
« Reply #303 on: August 08, 2009, 04:08:18 PM »
Andy,thanks for ur input,i was anxiously waiting for it,her doctor has asked me to stop asunra for a week and then repeat the test,i realy dont like the idea of stopping chelation entirely even for a week,i'd rather lower the dose or even cut it in half,Andy plz advice what do you think i should do? Drop chelation for a week or cut off the dose? She is on 800 mg and her weight is 27 kg.                 Thanks again                     Zaini.
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Offline Andy Battaglia

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Re: Wish us luck !!
« Reply #304 on: August 08, 2009, 04:30:58 PM »
Zaini,

Can you try half dose for a week? Would the doctor go along with that. I would also advise to increase any natural chelators like IP6 and green tea extract and also have her drink more tea during this period.
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Andy

All we are saying is give thals a chance.
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Offline Zaini

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Re: Wish us luck !!
« Reply #305 on: August 08, 2009, 06:27:00 PM »
Andy,

I don't know if doctor will listen to it or not,but i guess i'll do that anyway,i'll give her 400 mg for a week and then will repeat the test, once when her SGPT was 94 her hemo said you'll have to stop asunra once it crosses 100,so i think she'll say the same,we have her appointment for 11th of august.today it was ward doctor who suggested giving a break for a week.

I hope we won't have to stop asunra permanently,it would be devastating.

Zaini.
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Offline Sharmin

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Re: Wish us luck !!
« Reply #306 on: August 08, 2009, 08:55:26 PM »
Hi Zaini,

I hope that her levels return to normal soon.  Taking a break should reduce them quite quickly.  Please keep us posted. 

Sharmin
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Offline Zaini

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Re: Wish us luck !!
« Reply #307 on: August 19, 2009, 06:03:45 AM »
Hi Guys,

As i posted earlier we had to stop Lil Z's Asunra as her SGPT went really high,it was 231 at that time,we stopped Asunra for a week and rechecked her SGPT today,and it came back 66,so it has lowered although is still above normal ranges,her doctor also asked us to test her Creatinine which came back 0.6,and Total Bilirubin which is 0.9.So i asked her doctor and she permitted to resume Asunra although on a bit lower dose,previously she was on 800 mg,now we'll start again with 600 mg,and build up the dose gradually as we did before,so i am hoping that her SGPT won't increase that much again.

Thanks for your support.

Zaini.
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Kathy11

Re: Wish us luck !!
« Reply #308 on: August 19, 2009, 08:33:03 AM »
Goodluck to little Z' :bighug
 I hope this time you will be lucky   your enzymes will be steady, keep finger cross

Zaini  keep trying, because it is the only ways to succeed.

take care
 Kathy
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Offline Sharmin

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Re: Wish us luck !!
« Reply #309 on: August 19, 2009, 03:34:14 PM »
Zaini,

I am glad to hear that my friend.  I hope that her levels stay well within the normal range when you resume asunra.  When lil A was around 6 he had some sensitivity to desferal so we took it away for a while.  The sensitivity did not occur again after we resumed.  I think that lil Z will do well now.  We have just restarted exjade with lil A, he is supposed to be on 1000 mg 5 times a week and 625mg on the weekends - however we have just started him on the 625mg for now.  We will increase his dose slowly, as you are doing for lil Z. 

Take good care - I hope to hear good news in the future about our little sweetie  :hugfriend :hugfriend

Sharmin
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Sharmin
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Offline Canadian_Family

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Re: Wish us luck !!
« Reply #310 on: August 19, 2009, 04:18:58 PM »
Hi Zaini,

This is very good development for Little Miss Z. I thought 800mg of exjade was higher for her age. Pardon my ignorance but what is Zainab's ferritin, its importatn to manage the dosage of exjade with minimum side effects. The balance is delicate and should be carefully monitered by doctors.

Keep us posted.
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Offline Zaini

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Re: Wish us luck !!
« Reply #311 on: August 19, 2009, 05:48:40 PM »
Hi Eveyone,

Thanks Kathy and Sharmin, :hugfriend

Thanks Canadian family,

Lil Z's ferritin checked this month was 1400,and its been roaming around 1400 to 1600 since she started Asunra in January,and if calculated by the weight,her dose was almost 30mg/kg,as her weight is 27 kg.Now we will resume with 600 mg,and hopefully SGPT will remain in control.

Zaini.

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Offline Dori

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Re: Wish us luck !!
« Reply #312 on: August 19, 2009, 06:09:39 PM »
We have a Dutch saying 'De aanhouder wint'. My English slipped a little bit out my brains, but it means something as 'if you don't stop trying, you will win'.

Good Luck, Miss Little Z  :hugfriend
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Offline Manal

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Re: Wish us luck !!
« Reply #313 on: August 19, 2009, 09:46:57 PM »
Thanks Zaini for the update. I feel this is a good sign and i hope she will continue doing well inshallah
take care :hugfriend

manal

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Offline Zaini

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Re: Wish us luck !!
« Reply #314 on: August 20, 2009, 06:29:37 AM »
Thanks a lot Dore and Manal  :hugfriend Definitely we won't stop trying :) .

One thing else i forgot to mention  was her PHT,it was 71 and the doctor said it was in the high normal range,i don't know what difference would it make and what does the reading interpret? Any help ??? .

Zaini.
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